On April 27th, 2012 Brody's doctor explained that they were over-dialyzing (is that a word?) him and they were going to skip dialysis for the day. One day quickly turned in to a week, then a few weeks, then a month. Brody came home from the NICU without requiring dialysis but only orders for biweekly lab work. His doctors kept predicting that he'd eventually have to go back on dialysis before receiving his transplant but it was just a waiting game.
Well, it has been 1 year, 5 months, and 5 days. His little body has finally outgrown his kidney function so tomorrow he will restart treatment.
We were given the option to try peritoneal dialysis (which is what he was on while in the NICU) but that requires surgery to put another catheter into his abdomen (which would make 3 tubes in his tiny round belly), and 8 hours of treatment every single night. We would have a machine at home and Adam and I would be trained to do it ourselves.
Our second option was hemodialysis which would have to be done at a pediatric dialysis clinic, 3 hours a day for 3 days per week and it would require a catheter in his chest.
Even though we live an hour from the closest pediatric dialysis clinic, and both Adam and I work full-time, we went with the second option. We saw how uncomfortable Brody was while on peritoneal dialysis (filling & draining his belly over and over) and to be honest, it was extremely nerve wracking...I'm not sure I would be able to sleep with that going on. Ugh, I get anxious just thinking about it. We will make our schedules work- Adam can work longer hours if needed and even on the weekends, family has offered to help, and I can continue to work and build up sick time and take him myself every so often. We'll have our nights with only one machine to sound alarms (his feeding pump) and we know that this will be temporary. It's just a short bridge on our way to a transplant. He will hopefully feel much better (although he really doesn't act like what I would assume a sick baby to act like), eat better, and gain weight faster so we can reach our ultimate goal: transplant. Right now he is around 19 lbs and almost 19 months old. Just 3 more pounds to go...but that could take a few months.
I've already had the blood test done to see if I am a match to be a donor for Brody. Thankfully I am, as is my sister-in-law, Abby who also got tested. I hope to begin the rest of the work-up (MRI, ultrasound, etc.) within the next month or two to see if I'm healthy enough to donate... I hope we are celebrating Brody's second birthday fully recovered from transplant surgery. I can't wait to see him running after his brother and playing right along with his cousins. Right now he is a master crawler, a very cautious climber, and quickly becoming a bona fide walker! He is walking more and more every day and gaining the confidence for speed! Although he still doesn't really want to eat food, he'll put anything he finds on the floor right in his mouth. We just started speech/feeding therapy and I'm excited to see how this helps him. He is so happy and giggles at anything Ryder does. He has his momma's temperament, and his daddy's sense of humor. He likes to play peek-a-boo and loves to be outside. He likes to watch Spider-Man and Mickey Mouse Clubhouse and will dance to any and all music. He can say "DaDa", "Uh-oh", "uh-uh" (as in "no"), and "DUH" (this can mean both "duck" and "dog". And I think "I want that" and "go over here" and "what?" and "I want to go out side" and "yes, I want my bottle"). He can say "down" and recently learned "go dawgs!" and no, he still hasn't said mama. He has also started pointing at things he wants. I wish I could bottle up the cuteness and keep it forever.
He gives the best hugs and the most perfect kisses- smack and all.
So for now we continue to wait. Be patient, continue praying, and trust God to comfort and heal Brody. I know a transplant won't "cure" him and this is something he will have to deal with every single day for the rest of his life, but man will it be a sweet day.
Wednesday, October 2, 2013
Friday, March 15, 2013
Brody bear is ONE!
Well, it's official. My baby is the big 1.
We had asmall gathering of family and friends at our house this past Sunday and what a beautiful day for a party it turned out to be! I could NOT have asked for better weather. And since Brody is nothing short of an All-Star...and since he finished his rookie year (I'm a dork, I know)...we went all out baseball style. We served hot dogs, and had some other concession stand food & drinks to round out the menu.
Need some peanuts and cracker jacks? I've got plenty.
(but who cares, no big deal, I want moooooore! ...yes, I now have these two songs stuck in my head. You too? you're welcome!)
We didn't have the grand "welcome home" party that I initially hoped to have when Brody left the NICU so it was nice to have people over and celebrate his birthday. It was also really nice to get outside and take advantage of our porch, deck, trampoline(s), play ground, etc. after this long, wet winter we've had.
Did I mention the weather was gorgeous?
Of course our weekend wouldn't be complete without some sort of emergency. Big brother proved he doesn't let other people hog all the attention and decided to knock out another tooth. If you saw the picture Adam posted on facebook you know it had to have hurt. Ouch. I hurt just thinking about it. He actually didn't knock it all the way out, but just knocked it back to where the root was exposed and he couldn't close his mouth. The dentist took one quick look and said, "it's got to come out." Ugh. Anyways, he was a trooper and holds no hard feelings towards the dentist. And what's funny, Ryder's losing teeth and Brody's getting teeth. Brody's first tooth erupted on Feb. 27th and he got his second tooth on his birthday, March 11th.
Their smiles still melt my heart, with or without teeth.
In other exciting, or not so exciting news, I turn the big 3-0 this coming Monday. This is where I start pondering the whole concept of time and realize I really have no grasp on it. Wasn't I just starting college, wondering what the heck I was going to do with my life, and acting a fool? When the heck did I become a 30 year old wife and mother of two with a full time job? Jeeze.
Speaking of, I cleaned out some of my junk from my mom's house just recently and found some amazing things that brought me back to my childhood. Stephanie, remember these??
The 80's were awesome. And that's all I have to say about that.
Anyways. I am so excited that my brothers and their families, as well as my grandmother, are all coming down to visit soon. I cannot wait to see everyone. Everyone's a little happier when the boys are around. ;)
And now I leave you with a rare family photo because I have slacked off and shamefully hardly ever take real (as in not from my iphone) pictures anymore.
We had a
Need some peanuts and cracker jacks? I've got plenty.
(but who cares, no big deal, I want moooooore! ...yes, I now have these two songs stuck in my head. You too? you're welcome!)
We didn't have the grand "welcome home" party that I initially hoped to have when Brody left the NICU so it was nice to have people over and celebrate his birthday. It was also really nice to get outside and take advantage of our porch, deck, trampoline(s), play ground, etc. after this long, wet winter we've had.
Did I mention the weather was gorgeous?
Of course our weekend wouldn't be complete without some sort of emergency. Big brother proved he doesn't let other people hog all the attention and decided to knock out another tooth. If you saw the picture Adam posted on facebook you know it had to have hurt. Ouch. I hurt just thinking about it. He actually didn't knock it all the way out, but just knocked it back to where the root was exposed and he couldn't close his mouth. The dentist took one quick look and said, "it's got to come out." Ugh. Anyways, he was a trooper and holds no hard feelings towards the dentist. And what's funny, Ryder's losing teeth and Brody's getting teeth. Brody's first tooth erupted on Feb. 27th and he got his second tooth on his birthday, March 11th.
Their smiles still melt my heart, with or without teeth.
In other exciting, or not so exciting news, I turn the big 3-0 this coming Monday. This is where I start pondering the whole concept of time and realize I really have no grasp on it. Wasn't I just starting college, wondering what the heck I was going to do with my life, and acting a fool? When the heck did I become a 30 year old wife and mother of two with a full time job? Jeeze.
Speaking of, I cleaned out some of my junk from my mom's house just recently and found some amazing things that brought me back to my childhood. Stephanie, remember these??
The 80's were awesome. And that's all I have to say about that.
Anyways. I am so excited that my brothers and their families, as well as my grandmother, are all coming down to visit soon. I cannot wait to see everyone. Everyone's a little happier when the boys are around. ;)
And now I leave you with a rare family photo because I have slacked off and shamefully hardly ever take real (as in not from my iphone) pictures anymore.
 |
| "Cheese" |
Wednesday, February 6, 2013
Rough Start
2013. What can I say about 2013? Well, just in the month of January we visited the pediatricians office 7 times, made 3 trips to the ER, had 2 routine lab appointments, got 1 X-ray, and was admitted to the hospital for an overnight stay. But who's counting?
It started around Christmas with a monstrous bug that plagued both boys and left Brody wheezing and coughing and in need of breathing treatments for several weeks. It turned into pneumonia and about the time he started feeling better his nephrostomy tube decided to abort ship. That's been a fun ride. The surgeon does not want to replace the tube because of the large amount of scar tissue in his kidney. Keep in mind this is the only way urine can leave his body. So we are using catheters/feeding tubes that we have to place in his side ourselves and replace every few days until further notice. And even though he went through a really weird few weeks of refusing his bottle (he would only drink on avg. 1.5oz at a time) and throwing up a lot (when your kidneys don't perform normally you can feel nauseous because your body is not eliminating waste product like it should), Brody's lab work has actually looked really good lately. He's been struggling with the weight gain since November...actually lost a little weight...but *knock on wood* *fingers crossed* *praying on bent knees* he actually seems hungry and eager for food the past few days. This is something very new and very exciting. Brody is also starting to become mobile - army crawling and rolling around everywhere. He'll make you dizzy! It is so cute and also so encouraging to see him progressing. He has been in physical therapy for a few months now and the therapist is quite impressed with his improvement.
...I'm often reminded that life is sometimes 2 steps forward, 1 step back. *sigh*
In other news, I now have a 3 year old! Ryder, he is something else. I honestly cannot say enough about how funny this kid is. He is curious, cuddly, and all around BOY. Seriously. I don't even know what to write because my mind is just flooded with things he's done and said and I want to write it all down so I don't forget but there is just sooo much! ...my kid is just the best kid, all around, hands down. I'll leave it at that. Anyways, with Christmas, the sickies, and everything else going on I almost forgot to plan his birthday party.
But that's our little secret ;)
With mommy brain in full gear, we celebrated in style at Chick-Fil-A in Monroe. They were excellent and took care of us from start to finish. I highly recommend having your kid's party there, especially if you don't have time to plan anything more than the time & date. He enjoyed it and it was fun to watch him interacting with all his friends from school, and his cousins. ...He is currently obsessed with tools, trucks, cars, trains, guns, knives (Lord, help), Batman, Spiderman, Superman, and loves to watch Curious George and Max & Ruby. If you spend more than 5 minutes with him, he'll probably ask you why you have bones and who makes the sun come up, even though I've answered these very questions hundreds of times. He also likes to hunt for bears, deer, and wolves...they are everywhere!! He takes pride in working with his daddy and is the only person who can make Brody laugh instantly, no matter what.
Adam and I have both been crazy busy. And if we're not busy we're crazy tired. I look forward to things slowing down a bit and maybe going on a date or two with my husband. When you have someone babysit your child all day, every day while at work, it's kind of hard to find a babysitter on a Friday or Saturday night...it's also hard to not feel an enormous amount of guilt when you choose not to spend every waking second with them when nights and weekends are all you have. I know one day I will miss my kids, annoy my husband because we're always together, and look back at this and laugh.
And now I am reminded I must start to plan a FIRST BIRTHDAY PARTY!!! lol. Sometimes I feel like I'm just trying to stay afloat. :)
It started around Christmas with a monstrous bug that plagued both boys and left Brody wheezing and coughing and in need of breathing treatments for several weeks. It turned into pneumonia and about the time he started feeling better his nephrostomy tube decided to abort ship. That's been a fun ride. The surgeon does not want to replace the tube because of the large amount of scar tissue in his kidney. Keep in mind this is the only way urine can leave his body. So we are using catheters/feeding tubes that we have to place in his side ourselves and replace every few days until further notice. And even though he went through a really weird few weeks of refusing his bottle (he would only drink on avg. 1.5oz at a time) and throwing up a lot (when your kidneys don't perform normally you can feel nauseous because your body is not eliminating waste product like it should), Brody's lab work has actually looked really good lately. He's been struggling with the weight gain since November...actually lost a little weight...but *knock on wood* *fingers crossed* *praying on bent knees* he actually seems hungry and eager for food the past few days. This is something very new and very exciting. Brody is also starting to become mobile - army crawling and rolling around everywhere. He'll make you dizzy! It is so cute and also so encouraging to see him progressing. He has been in physical therapy for a few months now and the therapist is quite impressed with his improvement.
...I'm often reminded that life is sometimes 2 steps forward, 1 step back. *sigh*
In other news, I now have a 3 year old! Ryder, he is something else. I honestly cannot say enough about how funny this kid is. He is curious, cuddly, and all around BOY. Seriously. I don't even know what to write because my mind is just flooded with things he's done and said and I want to write it all down so I don't forget but there is just sooo much! ...my kid is just the best kid, all around, hands down. I'll leave it at that. Anyways, with Christmas, the sickies, and everything else going on I almost forgot to plan his birthday party.
But that's our little secret ;)
With mommy brain in full gear, we celebrated in style at Chick-Fil-A in Monroe. They were excellent and took care of us from start to finish. I highly recommend having your kid's party there, especially if you don't have time to plan anything more than the time & date. He enjoyed it and it was fun to watch him interacting with all his friends from school, and his cousins. ...He is currently obsessed with tools, trucks, cars, trains, guns, knives (Lord, help), Batman, Spiderman, Superman, and loves to watch Curious George and Max & Ruby. If you spend more than 5 minutes with him, he'll probably ask you why you have bones and who makes the sun come up, even though I've answered these very questions hundreds of times. He also likes to hunt for bears, deer, and wolves...they are everywhere!! He takes pride in working with his daddy and is the only person who can make Brody laugh instantly, no matter what.
Adam and I have both been crazy busy. And if we're not busy we're crazy tired. I look forward to things slowing down a bit and maybe going on a date or two with my husband. When you have someone babysit your child all day, every day while at work, it's kind of hard to find a babysitter on a Friday or Saturday night...it's also hard to not feel an enormous amount of guilt when you choose not to spend every waking second with them when nights and weekends are all you have. I know one day I will miss my kids, annoy my husband because we're always together, and look back at this and laugh.
And now I am reminded I must start to plan a FIRST BIRTHDAY PARTY!!! lol. Sometimes I feel like I'm just trying to stay afloat. :)
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